My life with ALS Vol. 1

First things first, I guess it would help if you knew a little bit more about me.

I am a US Army veteran having served from 1979 until 1990.

I am married to my wife who has graciously put up with me for 49 years and have a wonderful son and grandson.

I was first diagnosed with ALS in September 2019, with a onset of symptoms in 2008 my symptoms started with slight muscle fade in my hands along with instability in my legs.

Doctors along the way attributed my issues with my military service and the number of jumps I had from aircraft (3862 Loged Jumps)

It was not until my private physician started noticing changes in my speech that a neurological condition was considered.

Thinking I might have MS. He set up a appointment for me to see a neurologist and after the longest physical I have ever endured (to include entry into the military) he came in the exam room and said that he had good news and bad news…..

I said give me the good news first. He said you don’t have MS..…

I then said ok, what is the bad news. He said I am 99% certain you have ALS.

Well let me tell you, it was like having a sledgehammer slammed into my chest. I sat dumbfounded for one seemed like an hour, eventually asking….. So what is the prognosis.

3-5 years from onset is the average he replied. I have got to tell you, when you are faced with that type of news it puts your life in perspective. Not only how do you move forward in your own respect but how do you tell your loved ones.

The hardest part was telling my wife the news. Being a registered nurse, she was very much aware of the impending impact this would have on our life.

We got a appointment with the Vanderbilt ALS clinic in Nashville. After meeting with Dr’s an being evaluated, I asked about getting into one of the trial studies. I was told that I didn’t qualify for any, I asked why, I was told that all of the trials required that the participants be within 2 years of onset. I replied that I was just diagnosed, to witch he replied, yes but your onset was in 2008 based on when your symptoms first started.

At the time I was first diagnosed, I was working as a County Veterans Service Officer. Working with veterans filling claims with the VA. A very fulfilling job but one that requires exceptional verbal, written and typing skills, all things that are slowly leaving me.

I no longer am able to work but I am still a active member of my church, the VFW, American Legion and DAV although not at the level I would like to be.

I do believe that it is important to stay as active as possible, in mind, body and spirit.